My Baby

My Aunt and Uncle have some dear friends who have a large family. The wife was a lot like me in that she was probably never going to feel like she was "done" having babies. Several years ago, she was reaching the end of her child-bearing years when she found out she was expecting again. If I'm remembering the story correctly, she gave birth to a little girl, having no idea that the baby had Down Syndrome. My Uncle relayed how well they took the news and of how sweet it was that she would always have her youngest child (her baby) to love and care for. 

In Autism circles, like most circles, there are lots of opinions and a fair amount of people ready and waiting to get offended. There are the people who view Autism as a special gift that makes them super smart and unique, and they don't like the thinking that Autism needs to be cured. I would argue that those folks are probably higher functioning and not as tormented by their Autism and subsequent diagnoses like Josiah is each day. But I understand where they are coming from, and I only mention this line of thinking to assure you that I respect and love my ten year old son endlessly. But caring for him at ten years old is still very much like caring for him at 18 months old. He is and will probably always be my "baby." 

Imagine the vulnerability of an infant or even toddler. Their every need has to be met. Now imagine if that child had all the same needs and the same level of vulnerability, but could walk and run and was as strong as a ten year old. That is our boy. People often say to us about Josiah that "he understands a lot more than anyone realizes." I agree with that on a certain level, but I do not believe that my child is typical on the inside and just unable to speak. There is a simplicity about our boy. You can see it in his eyes. They are the eyes of innocence. They see the world with newness and surprise and with no understanding of the dangers and evils that are out there. Take for instance the wind. Josiah is absolutely mesmerized by the wind blowing through the trees. This never gets old for him, and he always seems surprised by how it looks and sounds and feels. 

He gazes into our eyes. Sometimes he sees us. And sometimes he sees his reflection in our eyes. Like the wind, he gazes with pure joy as a baby does seeing their reflection in a mirror for the first time. This is precious and sweet and endears us to our boy. But when you consider the day to day needs of someone who functions at less than one year of age, his vulnerability and helplessness is staggering. 

Josiah mostly eats finger foods. Staying at the table to eat is too overwhelming. So he roams about spreading a trail of crumbs where ever he goes. He isn't potty-trained so you can imagine all that that requires in terms of care. He cannot bathe himself. He cannot dress himself. He cannot fall asleep without help. He cannot maintain his sleep without me sleeping next to him. He has no concept of danger. He cannot soothe himself, but swinging soothes him so we spend hours swinging him each day. This is to say nothing of the care his sensory needs require.  

He has grown bigger and he has had triumphs like tolerating wearing shoes and socks and attending school for 45 min consistently. But, in so many ways, he is still my baby. I feel blessed to have him, love him, and care for him. He will always be my baby......

Christy    

Friday Funding Update:
January 27, 2017

We are at $43,069.31!!!!!  Our goal of $60,000 once seemed impossible to raise, and now it is starting to sink in that this is really happening. If we can continue raising funding at this steady rate, there is a great possibility that all the funds will come in by the end of May, if not before. THAT BLOWS MY MIND! Your generosity has been such a tremendous encouragement to our family!!! And this project is going to make such a difference in Josiah's life! 

Please continue to Pray! As I mentioned last week, our petition for additional home modifications was denied. People have asked why. The committee saw Josiah's needs. That was a no-brainer. But there is a stipulation that the home modifications cannot be seen as new construction. One of the things we were requesting is that the waiver fund a bathroom in the therapy room. Josiah is still incontinent. For purposes of protecting him, I will not go into the many reasons why a bathroom is needed. But, especially looking towards the future, it will be necessary to have a bathroom in this space if at all possible. We are submitting another petition in the next few weeks that hopefully will be approved. I always feel the need to clarify when I post about this petition. We started this fundraiser to help us complete this project, but we knew there were a few things that we could request funding for via the waiver. The bathroom, padding on the floor and walls to protect Josiah's head during self-injury, and shatterproof windows are the items that we are trying to get funded via the waiver. Please pray with us as we work to submit another petition for these safety features. 

This week has been wonderful overall in terms of Josiah's ability to tolerate life. He has had several days with little to no self-injury. I cannot begin to describe how wonderful it is when he has a day where he doesn't hurt himself. 

My Mama took Jalen to the Graham police department to visit this week. Elopement or running away is such an issue for our boys. It is the leading cause of death for children their age on the spectrum. We want the boys to be comfortable around police officers, and we want our local police officers to recognize our boys in case they ever elope. The plan is for a few officers to come to the house someday soon to visit with Josiah. I can't thank Graham PD enough for being so welcoming and for recognizing how important this is to the safety of our family!

I know I probably sound like a broken record each Friday, but we are so exceptionally grateful to everyone who is supporting us through this project. It is impossible to fully convey how much it means to us all! THANK YOU!

Because of His grace,

Christy

SCREAMING!!!

Josiah may not be able to talk, but that surely doesn't mean that he is silent all of the time. He makes little noises like "bebebebeb" and "yayayaya." It sounds a lot like babbling, and it is a sweet sound. But, when he is vocalizing, he often SCREAMS between the "bebes" and "yayas." And this scream......well.......it's hard to describe. Ear piercing seems like an understatement. I can never seem to catch the really good ones. The screams that break through silence and cause your stomach to skyrocket to your throat. 

THIS is just one of the reasons why going out in public is so hard. We live in a day and age when mass shootings and other horrible atrocities have become almost commonplace. Josiah's screams scare people. And we truly understand. I have actually wondered if he could possible scare a person to death. There has been more than one elderly person who has grasp their chest when we have braved taking him out. This past summer, I wanted to take all of the kids shopping to pick out their own bathing suits. Every once in a while, I get determined to do something with everyone together. We had our game plan. We had our staff for back-up. We were ready to divide and conquer. I think the trip lasted a total of 15-20 minutes. There were a few ugly stares, a lot of just curious ones, and a couple ugly comments, but we made it. Jeremy and I try to instill in our kids to always hold their heads high and never look embarrassed about their brothers. But sometimes it is understandably hard. We never realized how much we would miss blending in.

But the screaming isn't always bad. It has provided us with MANY laughs as well. A few weeks ago, I was driving with Josiah and Jack in our van. We stopped at a stop light, and a family pulled up next to us in their van. Our windows were up, but the mom's passenger side window was down. Josiah let out an ear piercing scream, and the mom, upon hearing it, let out a man sized bellow. Jack and I tried to contain our laughter until we drove away. 

There was another time that a tough looking biker pulled up next to me. Jo screamed, and the biker thought it was me. I thought he was going to fall off his bike in shock. He just turned and looked at me as if to say, "Did you really just scream at me, lady?" 

We take Josiah to church for about 15 minutes each Sunday. I am thankful that our church family does their best to smile through the occasional screams. They have shown grace to our family on countless occasions. And that is what I hope others gain from reading this post. Families like ours need your grace. There is nothing we can do to control the vocalizations of our children. We know that sometimes the screaming or loud noises can be disconcerting and even shocking. Once you move past your shock, smile and give an understanding glance. Your grace in the moment will make these families feel more accepted in the community setting. 

Since we can't go in public very often due to the screaming and several other reasons, we are so excited about Josiah getting this therapy room and therapy pool. It will provide him with endless hours of enjoyment and will help to fill the void that comes from always being at home. Thank you for helping us make this happen for our boy! 

Because of His grace,

Christy

Friday Funding Update:
January 20, 2017

What a week! I like to try and update the website twice, but it just wasn't a possibility this week. We had a specialist appointment with Josiah's gastro doctor on Tuesday. It went well. We feel confident he has Gerd, but there is one other thing that they would like to test him for as well. Diagnosing this would require Josiah to have an endoscopy. Since we know obtaining this testing will be very difficult for Josiah, we have opted to monitor him closely for the next six months. Basically, we are kicking the ball further down the road for the time being to avoid putting him through this now. The doctor agreed that this was a fine approach since the strong likelihood is that we are just dealing with Gerd. We are praying that his current medication continues to do the trick. 

Jalen has not had any seizures since started his medication! And he seems to be adjusted to the meds fairly well. We increase his dosage to the full amount starting today. Please continue to pray that this works for him! 


We got some disappointing news yesterday. Our waiver petition for additional home modifications has been denied. We will have the opportunity to appeal this decision. So I will be busy for the next week or so gathering more supporting documentation and putting together the appeal to present to them. We are praying that they will be willing to "meet us in the middle" and approve Josiah for some of these modifications to ensure his safety. Living in a country where we are given the opportunity to petition for these services and advocate for our special needs children is such a blessing. So, with joy, we return to the grindstone. 

JOY! More than feeling disappointed, I feel JOY! I could have never imagined how fast God would bring in the support needed to complete this project. As of yesterday, we are over two-thirds of the way there! Our current total is $41,019.14!What a blessing and encouragement this is to our family!!! I cannot wait to get started on the first phase of our project! The petition appeal is delaying us getting started, but I am reminding myself every day of how important it is that we do this right. It won't be long! What a JOY!

If you access our website by using your smart phone, you may not see all of the tabs describing the project. You can read all about our plans here: http://www.supportjosiah.com/p/about-project.html. We have some exciting fundraising opportunities on the horizon. Would you consider joining us in our efforts? Perhaps you may not be able to host a fundraiser yourself, but would be willing to help us by doing the leg work for one of our ideas. If so, email me! I would love the help! christyverroi@gmail.com

Thank you to everyone who is working so hard to help us reach this goal for Josiah! It is truly going to make such a HUGE difference in his life!!!

Because of His Grace,

Christy

Friday Funding Update:
January 13, 2017

It is an amazing thing to witness how God is providing for this project. After the Christmas and New Year holidays, I was completely prepared to not see much gain in our fundraising total. But God provided over $1600 just in the past week, and our total is now $39,722.34! 

I'm keeping this update short and sweet today. We have had quite the week! Josiah has been much calmer since the weather has been warmer the past two days. What a blessing!! Jalen started seizure medicine after being diagnosed with epilepsy last week. He is doing well so far. He had dental surgery today after breaking a tooth due to his Pica (eating non-edible materials). This kid keeps us on our toes. His WONDERFUL dentist said he actually had a piece of plastic stuck down inside his tooth. Ouch! 

I should hear back about our petition for the extra home modifications by the beginning of next week. Please continue to pray that God will provide as He sees fit in that area. 

We are pressing on, and we are so very thankful for all of the love, care, and support we have received from everyone who has donated to this project! From the bottom of our hearts: 
THANK YOU!

Because of His grace,

Christy 

We Survived!

It started snowing this past Friday. I think we got about 8-9 inches. I know, to our Northern friends, this seems like so little. But North Carolina doesn't typically get the nice powdery stuff. Our snows most often involve ice and a lot of it. Our drivers are not experienced, our roads are not as prepared, and our vehicles are ill equipped to make driving safe. 

But Josiah has to ride. And Autism never pauses. 

Lest you are bracing yourself for a super negative post, let me start with the positive: my parents. Jeremy and I often talk about how gracious God was in allowing us to grow our family while living so close to my Dad and Mama. They worked together to manage Josiah most of the day on Saturday and for several hours on Sunday. Those "breaks" from the constant care that Josiah requires are a gift that very few people are equipped to give us. I am so thankful for them. On the days where I am at my lowest, they are typically the blessing God first brings to mind when He pricks my heart to start viewing my glass as half full. (Thank-you Dad and Mama for being so selfless!)

Saturday morning, the boys enjoyed some time outside with Jeremy. Olivia and I kept Josiah inside. It was a struggle, because he really wanted to go outside too. But winter clothing is not sensory friendly. He cannot tolerate a coat, and he often can't even tolerate wearing long sleeves. It was just too cold for him to go out. Papa and Meemaw picked him up, and he had a good visit with them with just a couple of significant self-injurious episodes and a handful of minor ones. 

Josiah loves his family, but his hearing is so sensitive. We can have everyone closed up in the back of the house with a loud exhaust fan running, and the small amount of noise coming from the back is still overwhelming. And so we take van rides. 

By Sunday, he was determined to ride his "normal" amount. Jeremy dug my van out and took Josiah for his first ride not long after he woke. He tested the roads and gave me directions for where to drive and where not to. We rode until my parents picked him up after church. 

Our kids were dying to go sledding. And I was determined to make it happen. I wish my attempt at grasping for normalcy had gone better. We made it to the sledding location. I had not realized how far we would have to walk to get there. Olivia, Jack, and Judah were fine. But Jalen wouldn't stop wandering away and eating snow. And the boots that Jason was wearing were four sizes too big which made it impossible for him to walk. We lasted about ten minutes before I started getting very concerned about what would happen if Jalen had a seizure out there. We laid Jalen on one of the sleds, and we laid Jason on top of him while admonishing Jalen to hold on to his baby. I quickly pulled them back to the van, and we all agreed heading home would be wise. It makes me sad to see my children surrender to our "normal." I know God has a plan in it, but it doesn't change the fact that it is hard.

My Dad knew that sledding had gone terribly. So he called Monday to let me know he would be taking the kids sledding with two of their cousins that afternoon. I am so thankful again for parents that are always looking to meet our "needs." We long to be able to provide for our children in every way. But our reality is that it takes help. We are so very thankful for that help!

How does this all relate to this project? I couldn't help but allow myself to dream about what next year's snow might be like. If God is pleased to bring all of our fundraising goals to fruition, Josiah will have his therapy room to escape to when he needs quiet. He will have his pool to enjoy even when there is snow and ice blanketing the ground. He may still need to ride occasionally,  but I feel confident that that need will be greatly lessened. Jeremy and I can't provide this for him without your help. But God has blessed our efforts thus far in raising the funds necessary to make this happen. And He is providing that funding through the gracious gifts given by you! So, in a truly tangible way, you are helping us care for our boy. 

We are forever grateful, and we have so much to be thankful for!

Stay warm! 
Christy 

Friday Funding Update:
January 6, 2017

"Give thanks to the LORD, for He is good; His love endures forever." Psalm 107:1

I cannot begin to express our gratitude and love to the Lord and all who have given to support us through this fundraiser for Josiah. In three months time, you have given $38,107.16! We are fast approaching being two-thirds of the way towards our goal of $60,000! And that is AMAZING! God is good, and you all have been so exceptionally loving and generous in your support! 

PLEASE PRAY! 
We submitted our petition to the waiver for home modifications. I want to be clear. The modifications we are seeking approval for via the waiver are things not included in our fundraiser.  Things like shatterproof windows and padding on the floors and walls. The padding alone is close to $3,000. And there are several other things that we have requested that will add to the safety of the the room for Josiah. The waiver committee has a few days left to make their decision. Please pray with us that, if the Lord be pleased, we would be approved for these modifications. 

A HUGE shout out to our friend Darla who raised $425 for Josiah through her Norwex fundraiser!!! Thank you Darla for your loving support!

The past few weeks have been challenging to say the least. But God continues to be faithful! I am heading to the neurologist with Jalen this afternoon. Please pray that the Lord will give us wisdom to know what to do about his seizures. 

SNOW! I love it, but it is so exceptionally hard for Josiah. I have mentioned previously about how barometric pressure changes affect him. This past week's rain was so hard on him. And the upcoming snow has the potential of making life pretty unbearable. Please pray for our boy in the days to come. Pray that the Lord will give us all wisdom to know how to comfort him. Please pray for our other children as well. If Josiah is off, being stuck in this house can be very hard on them. 

It's a new year! We are so excited about what God has in store! We pray that this year will bring the completion of this project for Josiah, and that it will make a huge impact in his life. Thank you for giving! Thank you for sharing our story with others! Thank you for praying for our sweet boy and for our family!

GOD IS GOOD!

Christy

*You can follow this link to donate! Thank you!
http://www.beaconbaptist.com/donate/

"It's An Extraordinary Situation."

I texted Jeremy my apologies. Punching a hole in the wall seemed like the thing for me to do at the time. Now we just have another hole to patch, and it did nothing to alleviate the anger, heartache, and concern I felt so covered over by in the moment. His response was kind and full of grace: "No apologies necessary. It's an extraordinary situation. I'm happy to give you as much latitude as you need. You've certainly done that for me." 

It is an extraordinary situation. I started this website in an endeavor to advocate for Josiah's needs. He needs this therapy room and pool so badly. And the only way to get this accomplished for him is to ask for help. And the only way I feel comfortable asking for help is by sharing our story. The hope is that you will see the need, and perhaps feel compelled to help our boy. 

But advocating wasn't the sole reason for this website. It's about educating as well. We are not the only family with children this severely on the spectrum. And severe autism is rarely FULLY shared about. I don't "tell it all here" mostly because Jeremy and I want to protect our children. We want to protect their dignity, and we want to make sure that my "sharing" won't put them in any danger or cause them pain. Knowing how much to share is a struggle. 

I have mentioned Josiah's self-injury a lot. It is the main driving force behind the need for this fundraiser. There are so many reasons why Josiah hurts himself. But there is another side to the self-injury that I have only very briefly talked about. It is the aggression. Kids like Josiah who are non-verbal and very severely on the spectrum often engage in aggression. In Josiah's case, I believe his aggression is communication. He pinches, scrapes, smacks, and pulls hair when he is trying to to tell you he is hurting. He also does this at times of extreme excitement and extreme upset. He is most often aggressive when he is trying to keep us from restraining him during episodes of self-injury. He hurts himself. We restrain. He hurts us. We stop his aggression. He hurts himself. This cycle typically happens several times until we are able to get him in a position that keeps us both safe. 

Why am I telling you this? I know of families hurting like us. We feel that sharing about the aggression will somehow make you think less of our children. In most cases, they are not meaning to hurt us. We wonder if you can really grasp the fact that there isn't a "Just" that will fix this. "Just try a new communication system." "Just don't let him grab you." "Just ignore it." "Just be careful not to reinforce the behavior by reacting."  

Will you think worse of me knowing that in anger, concern, and hurt I punched my fist through a wall? Jeremy and I are often painted as pictures of patience. Our family could tell you that is just plain hogwash. Jalen had a seizure yesterday afternoon. Josiah had a major meltdown right on the heels of that. He hurt himself badly, and he hurt me too. And I punched a wall. I punched it out of anger for not being able to protect my child. I punched it out of anger for not being able to protect myself. I punched it over the concern that grips my heart about what the future may hold. I punched it because this is an extraordinary situation that causes extraordinary heartache. 

I mentioned above that I'm sharing on this website to advocate for Josiah and to educate others. But I'm also sharing here for the purpose of telling about the hope we have in Jesus. Every painful detail I share is true, but it is also true that, no matter how I choose to respond, God is in control. None of this surprises Him. He has a purpose for the extraordinary situations He chooses to bring into all of our lives. And He is not surprised by our extraordinary and even wrong responses at times. 

To the parents hiding their injuries associated with caring for their severely special needs children, we understand. I pray God makes Himself known to you. I pray He gives you comfort and strength to face all that loving and caring for your child entails. And, if you punch a wall, we understand that too.  

Thank you to everyone helping us reach our goal for Josiah. This therapy room and therapy pool will go such a long way towards helping calm his senses and upset, and this will help tremendously in avoiding self-injury and aggression.  

Because of His grace,

Christy 

Please continue to pray for wisdom as we try and
figure out why Jalen is having seizures.